Coverage of milk sharing in the national press, Dec 2017
10th January 2016
The mothers who share breast milk online
Thousands of women are sharing their own breast milk via social media groups in an effort to help others, a BBC investigation has discovered.
The Department of Health is now coming under pressure to issue more guidance to these mothers, who are acting outside of NHS supervision.
Some experts fear the unregulated practice could spread infection and viruses such as HIV and hepatitis.
But advocates argue mothers are making an informed choice.
When Bex Poole, from Wolverhampton, had difficulty breastfeeding her baby son Theo, she was anxious to find an alternative supply.
Theo was not putting on weight at a healthy rate but she does not drink cows’ milk herself and was reluctant to supplement her son’s diet with formula.
A friend suggested she look at a Facebook page called Human Milk for Human Babies UK, which facilitates breast milk exchanges between those mothers with surplus breast milk and others who need it.
Likes for the page have increased fivefold to almost 18,000 in the past five years.
“My milk wasn’t increasing in any way,” she said.
“I jumped straight on the page, no hesitation, and appealed for help.”
‘I had too much milk’
Shortly afterwards, she was contacted by Sarah McHugh, a new mother from Kidderminster, in Worcestershire.
She had struggled to breastfeed her daughter Harriet and had ended up expressing milk to feed her with.
“I ended up having too much milk,” she said. “I’m on some Facebook groups for mums who express and breastfeeding mums so I put in a request saying I had some milk to donate.”
The women’s first meeting took place late at night and had an illicit feel to it.
“There was no other time we could do it,” Ms Poole said. “It felt almost like a naughty transaction because her door is a little bit hidden behind some garages.
“Her little one was asleep, she was in her pyjamas ready to go to bed. I picked the milk up and came away but said thank you via text when I got home.”
Ms McHugh said she felt happy something positive had come out of the difficulties she had experienced feeding Harriet.
“At the moment there is a very big drive to breastfeed.
“And some people that can’t breastfeed or maybe can’t make enough milk are feeling they have to explore [avenues such as online milk exchanges].”
Now the pair feel they have struck up a bond as a result of the exchange and Ms Poole’s freezer is full of Ms McHugh’s breast milk.
Is it safe?
Informal schemes such as this have, however, attracted some criticism from experts who question whether it is safe to feed strangers’ milk to babies.
Ms Poole and Ms McHugh said the key to success was making sure you asked the right questions prior to exchange.
“I volunteered quite a lot of personal information,” said Ms McHugh. “I said I was fit and well and that I wasn’t a smoker and I also donate to the hospitals’ milk bank, which I think reassured them.”
“There’s an unwritten trust among breastfeeding mums,” Ms Poole said. “I don’t believe a mum would share any milk if they’ve got problems.”
The Facebook site offers guidance for anyone considering using it and urges people to discuss medications, alcohol or drug use. It suggests using a health care provider for further testing if worried and asking for copies of results.
Many countries already test for infectious diseases during routine prenatal/antenatal care, it says, and it suggests looking into home pasteurisation if worries persist.
However, Dr Gemma Holder, a consultant neonatologist at Birmingham Women’s Hospital, is concerned mums who exchange milk without medical supervision might risk their babies’ health.
She works at the hospital’s milk bank, one of 16 official sites across the UK and Republic of Ireland, where donated breast milk is collected on a large scale and sent to sick and preterm babies in hospitals.
The donated milk is carefully vetted in line with NICE guidelines.
“When the milk comes in we first have to screen it for infection,” Dr Holder said.
“Mothers who donate milk also have to have their bloods tested to ensure there’s not a risk of blood-borne viruses – things like HIV, syphilis and hepatitis B – being transmitted to babies.”
The milk is pasteurised before it is frozen, ready for use.
“Fresh donor milk has significant risk of potentially passing on infection, particularly if you don’t know how it was handled,” said Dr Holder.
“We know from just screening our milk there are bugs such as E. coli.
“We still get a couple of donors a month, for example, whose milk we aren’t able to accept. This could be higher in the community, where none of these precautions are in place.”
But Dr Sally Dowling, from University of the West of England, in Bristol, points out women have always shared milk with each other.
She said the World Health Organisation (WHO) supports feeding babies milk from another woman as an alternative to breastfeeding by the mother.
“The studies that have have taken place increasingly show that women make all sorts of judgements about risks for themselves,” she said.
“They find out about the women whose milk they’re acquiring – things like whether they washed hands when they expressed the milk, for example, or any infections or tests the women might have had done.
“Yes, there are some risks but on the whole women are going into this with their eyes open and finding out as much as they can.”
‘More guidance needed’
The Food Standards Agency says it does not recommend sharing donor breast milk for safety reasons.
“Parents wishing to donate, share or obtain breast milk should contact maternity or other medical services for advice,” a spokesman said.
“Some NHS hospitals can provide donated breast milk for your baby.”
However, experts have called for the UK government to do more.
Alison Thewliss, the SNP politician who chairs the all-party parliamentary group for infant feeding, believes the rest of the UK should follow the Scottish model.
One Milk Bank for Scotland is part of the health service and ensures breast milk can be collected from donors, processed and distributed using a well-developed network.
Ms Thewliss believes the Department of Health should take overall control of the breast milk donor services in England.
“At the moment, milk banks are often underfunded and running as a project of individual hospitals,” she said.
“I would like to see the UK government work with the UK Association of Milk Banks to invest in services to allow those wishing to donate breast milk to be able to do so locally in a safe and regulated way, and for those requiring breast milk for their babies to be able to access it easily”.
Breastfeeding: ‘Why I gave my baby another woman’s breast milk’
Kay Elliot was struggling to breastfeed her third son, Ollie. Despite successfully breastfeeding her first two children, the 32-year-old from Cardiff was suffering with “horrendous” nipple pain and Ollie was losing weight.
Meanwhile, Harriet Tutton, 28, living 10-miles away in Barry, had expressed so much breast milk she bought a second freezer to store it. Accepting a “selfless” donation from Harriet “just made sense”. Here, they share their story.
“It never occurred to me not to breastfeed,” said Kay.
“I’d previously breastfed my first two sons and the relationship that we developed was just fantastic.”
But this time things were not going to plan.
“We had horrendous breastfeeding issues,” she said. “I have a permanent scar from Ollie latching. We’d had weight gain issues as well.
“At one point I was told that some women just can’t breastfeed, but I knew I wasn’t one of those, because I’d done it before.”
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Kay had met Harriet at a breastfeeding support group. Harriet’s baby, Luna, had been unable to latch on to her breast so Harriet was expressing breast milk for her using a pump and feeding her from a bottle.
Harriet said: “I’ve expressed since the beginning. For the first three months I was expressing once every two hours. It just started adding up and I had to buy a new freezer for all the milk.”
Running out of space, she took to social media to ask for advice on what to do with all her frozen milk.
“I put on a Facebook group that I didn’t know what to do and someone suggested that I donated it, so I then started looking into it.”
But she decided against donating through a milk bank.
“We don’t have a milk bank in Wales and I didn’t see the point in going for a load of unnecessary tests either – I was tested for everything in pregnancy and was all clear.
“There was such a huge demand around me and so the whole process wasn’t needed.”
Harriet began giving the breast milk stored in her freezer away to other mothers.
This means it has not been screened for disease, infection and bacteria as it would be in a milk bank.
Public Health Wales, the body overseeing health and wellbeing in Wales, has been asked for its view on informal milk sharing.
But Anna Burbidge from breastfeeding support organisation La Leche League said it did not take “any for or against position on milk sharing”.
“If a mother does feel she needs extra milk then the licensed human milk bank or another regulated, medically-supervised human milk bank is the best alternative really because it provides pasteurised, screened donor milk,” she said.
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But this did not deter Kay from accepting breast milk from her friend.
“Harriet had this amazing oversupply, just mounds of milk in the freezer and it just made sense,” she said.
“I knew where the milk was coming from and Harriet selflessly donated to us.
“It’s always in the back of your mind in terms of medication, diseases, but the chances are if you’re obtaining breast milk from a mother that’s already breastfeeding, those are going to be issues that aren’t there because she’s already feeding her own daughter.
“I know Harriet, I’ve been to Harriet’s house. I know that she’s meticulous in terms of hygiene because she expresses for her own daughter, so those issues for us just aren’t there.”
But Kay knows others may not share her views.
“I think I’ve been selective about who I’ve told,” she said.
“Luckily, I have an amazing support network of very similar-minded friends who all think it’s just the most amazing thing ever.
“Unfortunately, there are some narrow-minded people and, indeed, some people who will never agree with informal milk sharing.
“So I tell the people I want to tell. In terms of other people, it doesn’t come up. So we just avoid those sorts of conversations.”
Harriet and Kay’s story is not unique.
Historically, babies have been fed by wet nurses when their mothers have been absent, unable or unwilling to breastfeed.
Before the invention of bottles and formula, wet nursing was the most common alternative to the birth mother’s breast milk.
Kay’s son, Ollie, has just turned two and now has his mother’s breast milk from a cup.
Kay said she has no regrets about using Harriet’s breast milk.
“Breastfeeding is something that I’m massively passionate about… obtaining donor milk was just the next step.
“Luckily, I was in the right place at the right time to obtain breast milk. It made total sense.”
Harriet’s daughter, Luna, is now almost two and Harriet continues to express breast milk for her and to donate to other babies, having donated to between 15 and 20 babies so far.
“It’s really rewarding,” she said. “You’ve helped them grow. You’ve made them into little humans.”